A cancer diagnosis of any type triggers a wide range of initial reactions and emotions. While in some instances it might provide a sense of resolution, a more typical response may include sadness, loss, fear, guilt, stigmatization, embarrassment, anger, or disappointment.

Many aspects of living with a prostate cancer diagnosis can be sources of anxiety and depression— everything from anticipating the next PSA (prostate-specific antigen) blood test results to dealing with the post-treatment impact of common side effects like incontinence and erectile dysfunction (ED).

Unfortunately, men and their partners are not always fully informed about the likely side effects when selecting a treatment. In addition to managing the anxiety resulting from ED and/ or incontinence, an unexpected decrease in a man’s sexual virility can lead to a sense of betrayal or reduced trust in his medical provider or in the medical community in general. Recognizing and learning to cope with anxiety and depression can be critically important for effectively managing life with prostate cancer.

In a recent collaborative survey conducted by Us TOO International and CancerCare, 94 percent of men who were diagnosed with prostate cancer indicated that experiencing anxiety and/or depression is to be expected. Anxiety and depression can interfere with a person’s day-today activities, responsibilities, and relationships and can impact not only the person with cancer, but also the caregiver. Helping family members manage their distress may have a beneficial effect on the distress level of the person with cancer.

The stress and anxiety associated with a prostate cancer diagnosis can be significant enough to influence a man on active surveillance to opt for treatment earlier than necessary, resulting in what is often referred to as over-treatment.

Treatment decisions must address whatever aspect of disease management is a priority for each man, after he has sufficient information on all treatment options, possible or probable side effects, and management of side effects.

One man’s priority could be to do everything he can to minimize the possibility that prostate cancer will metastasize, while another man’s priority could be to do everything possible to maintain and maximize his quality of life. It is important for a man to recognize that once diagnosed with prostate cancer, the disease will unfortunately be a perpetual issue of concern and a potential source of anxiety due to ongoing monitoring of PSA test results at a minimum, regardless of the course of action he takes. While active surveillance can be emotionally exhausting, over-treatment can result in decreased quality of life with ED, incontinence, and the potential emotional and psychological impact of having second thoughts about his treatment choice.

Symptoms of Anxiety and Depression

Anxiety and depression not only affect the quality of a man’s life, but can also keep the body’s immune system from functioning at its full capacity. Additionally, it can have a negative impact on adherence to treatment regimens. Therefore, it’s important to recognize these conditions and attempt to address them accordingly.

Anxiety is a feeling of nervousness, fear, apprehension, and worrying—typically about an imminent event or something with an uncertain outcome. Symptoms include: feelings of fatigue or weakness, sweating (for no reason), chest pains, headaches, gastrointestinal problems, or inability to rest.

Depression is a feeling of severe despondency and dejection. Symptoms include: sleeping more or less (as compared with regular sleeping habits), loss of interest in daily activities, an unusual increase or decrease in energy, changes in appetite (eating either more or less as compared with regular eating habits), increased irritability or impatience, or difficulty concentrating.

Action Items to Help

Take action rather than passively accepting anxiety and depression as a given. Begin by acknowledging the very real relationship between anxiety, depression, and prostate cancer. Take stock of your own emotions. Talk to your doctor about your concerns. Make sure your diet is heart-healthy/prostate-healthy. Exercise even if you do not feel like it. Especially if you do not feel like it! Exercise releases endorphins and neurotransmitters that promote relaxation and eliminate excess cortisol, a hormone released during stress and associated with anxiety. Get mindful and try to incorporate yoga, meditation, acupuncture, or other holistic practices into your life. These lift the body, mind, and spirit. Try to keep a positive attitude when possible, but understand that ups and downs are normal and expected during prostate cancer treatment.

If appropriate, your doctor might be able to provide a referral to a counselor who can help. Some common techniques to effectively manage anxiety include talk therapy (especially Cognitive Behavioral Therapy [CBT]) and antianxiety medications. Depression can be managed though lifestyle changes to establish more connections and support, psychotherapy (including Cognitive Behavioral Therapy), pharmacological treatment and, in advanced situations, Electroconvulsive Therapy (ECT).

Reach Out!

If you are dealing with prostate cancer and experiencing anxiety and/or depression, know that you’re not alone. Educational resources and support services are available to help cope with anxiety and/or depression.

Many men with prostate cancer and their wives/partners have dealt with anxiety and depression. It can be helpful to attend an Us TOO prostate cancer support group to share experiences and gather information and strength from those who have successfully managed these challenges.

Dr. Paul Cathcart is a consultant urological surgeon at Guy’s Hospital and St. Thomas’ Hospital in London.

Prostatepedia spoke with him about a clinical trial he’s running that looks at robotic surgery in men whose prostate cancers have come back after focal therapy.

Why did you become a doctor?

Dr. Paul Cathcart: I always liked science; that was my favorite subject. I was thinking about whether to become a vet or a doctor and did lots of school visits. During one of those visits, I met an inspirational character, a surgeon. I spent some time with him, following him around hospital wards and clinics. I thought that he was the sort of person I would like to be: he does the job I’d like to do. I think that’s often the case in life: you meet some inspirational figure who pushes you along one line.

Later on, another inspirational figure who came into my life was a urologist. I was originally going to be a colorectal surgeon. Everything was set for that. Then I met this urologist who showed me the different mix there is in urology, which I found interesting. Then I met Dr. Mark Emberton; I was his research fellow for many years. He’s quite an inspirational person as well. I’ve been working with him for 17 years now on various things.

What is the thinking behind your trial on robotic surgery after focal ablation?

Dr. Cathcart: Focal therapy is a new concept, which Dr. Emberton and one or two other people have pioneered to reduce the side effects and morbidity of prostate cancer treatment. Unfortunately, a proportion of these patients will experience recurrent disease after focal therapy. No cancer treatment is 100% effective. A couple of these focal therapy patients were recurring three or four years after starting the focal therapy program.

No urologist wanted to operate on these patients because they felt that it would be an extremely difficult surgery. In fact, urologists were only offering exenterations to remove the patients’ prostate, bladder, etc.

I got to know quite a few of these patients. (I do a lot of post-radiotherapy surgery, as well.) I decided that this procedure called salvage surgery interested me. We thought that we could do this salvage surgery and maintain good outcomes for our patients because only part of their prostate had been treated during focal therapy. We thought that the side effects of the surgery after focal therapy would actually be a lot less than after radiation, but we needed evidence to prove it. That is why we set up the trial.

We’re also interested in learning why some patients may fail focal therapy. What is it about their disease that leads it to recur? If we can understand why some patients may fail focal therapy, this can help us select up front which patients should have focal therapy and which should not.

What can patients expect to happen during the trial?

Dr. Cathcart: We are halfway through the study at the moment.

Of course, patients undergo a salvage prostatectomy. We take the tissue to be analyzed and look for various genetic markers to see why their cancer may have returned.

This is also a toxicity and side effect study. We have patient-reported outcome measures at baseline and sequentially thereafter. There are a number of blood tests looking at hormone profiles before and after the surgery.

We follow patients for about 12 months after those sequential patient-reported outcome measures; we’re looking to chart that toxicity.

I’ve taken out more prostates after focal therapy than most because of my link with Dr. Emberton. We’re now demonstrating the feasibility and toxicity of salvage focal surgery and trying to understand why these tumors have recurred.

Are you still recruiting patients?

Dr. Cathcart: About 20 patients have undergone the surgery. We’re recruiting 20 more. We haven’t had any adverse events. We were worried about things like rectal injuries, because the rectum can stick to the prostate after focal therapy. We haven’t had any of those.

We’ve actually had a fantastic continence outcome. The prostate cancer community said everyone would be incontinent and impotent, but all our patients so far have been continent.

We’ve got the patient-reported outcome measures to demonstrate it.

The potency rates are taking a little bit longer to return to baseline. The outcomes from potency won’t be as good as the continence outcomes. We haven’t had any side effects at the time of surgery. No complications or anything, so we’re delighted with the way things have gone.

Does the fact that the man has had focal therapy make the potency issues worse?

Dr. Cathcart: It depends on the location of their focal treatment. In those with anterior tumors (tumors away from the neurovascular bundles), we’ve noticed potency returns faster. If they’ve had an ablation on the peripheral zone, near where one of the nerve bundles is located, potency returns more slowly.

We’re also noticing a difference between different treatments. You can give focal therapy with high-intensity focused ultrasound (HIFU), cryotherapy, or something called electroporation. The different energy sources have different effects on the structures surrounding the prostate and a different impact on the chance of potency returning. Electroporation seems to be very precise and leaves the least amount of collateral damage. In those patients, potency returns faster. Cryotherapy creates more periprostatic fibrosis and scarring; potency takes slightly longer for those patients to return. Potency return for HIFU patients falls somewhere in the middle of the modalities.

I’ve also taken out prostates after photodynamic therapy. Photodynamic therapy is better relative to preserving the tissue planes, but it does depend on which part of the prostate has been ablated in the first place.

Is there anything else you think patients should know about your trial?

Dr. Cathcart: We’re going to get a great understanding of why these patients in particular failed focal therapy. The genetic markers and the locations of the tumors will inform which patients are suitable for focal therapy from the beginning. There may be parts of the prostate, or particular types of tumors or genetic markers, which will identify patients best suited to a whole-gland approach such as a radical prostatectomy up front.

It’s not just about the location and grade of the tumor, but also about the tumor’s genetic signature, which may predispose a particular tumor to being better suited for focal therapy.

It’s interesting, in some patients you knock out one tumor say on the right-hand side and that’s it, the tumor never comes back. Other patients’ prostates seem somewhat unstable and have multiple tumors that keep appearing throughout the prostate. I’m sure there is a genetic basis to it.

Because we’re taking out these patients’ prostates, we can analyze all the different tumors. Some people even think that by treating part of the prostate we may be changing the genetics of that tumor—i.e., it gets angrier. I don’t think that’s the case. This study will help prove that point. We’re also going to open up a comparative arm of the study very soon for patients who have had whole-gland radiation or ablation techniques—open to anyone who has had the whole of their prostate treated with brachytherapy, radiotherapy, HIFU, or cryotherapy. We’ve been finding that patients who have had surgery following focal therapy have better outcomes than those who have had whole-gland therapy up front. We’re going to recruit into that second arm to demonstrate that surgery after focal therapy has a better outcome.

Can non-UK residents come to you for surgery?

I’ve got a clinic called the Recurrent Prostate Cancer Clinic. I have a reasonable number of patients who come from the United States. They normally come to Dr. Emberton for focal therapy, then if they develop recurrent disease, I operate on them. A lot of urologists wouldn’t operate on these patients. Certainly, in the United States, hardly anyone operates on post HIFU patients simply because HIFU has not been available until very recently.

One of the common things we rally around is the efficacy of PSA screening and what guidelines panels have shown. The US Task Force panel in 2012 gave PSA screening a poor rating and downstream this impacted biopsy and other effects to treating prostate cancer.

Their study quoted a 1990s study that said 1 in 200 men undergoing prostate surgery died within 30 days…the problem was that it lost data when the patient was discharged…the data set is now better, it is called premier perspective, and now it does capture discharged data so you can get a clear 30 day rate.

There has been a dramatic shift, when we first looked at the database from 2004-10, so the predominant technique was open surgery. Now, looking at the 2008-16 data, and the shift is heavily robotic.

Over the decades, the mortality rate for surgery is significantly improved over what the Task Force quoted in their evidence review, and we need to continue this trend. If you look at how many people screening saves in prostate cancer mortality, if you create a new treatment-related mortality that is non-prostate that has undone your effort. In the future direction of prostate cancer we need to also pay attention to non-prostate mortality.

Imaging is important for newly diagnosed prostate cancer patients who may or may not have localized disease, and it’s especially important for advanced prostate cancer patients, whether they continue to be androgen sensitive or have developed some level of androgen resistance. For earlier stages of disease, there has been a lot of interest regarding multiparametric MRI. Nonetheless, the efficacy of multiparametric MRI is limited by the expertise of the interpreting radiologist. The fusion technology software championed by several of the academic centers has been rolled out without consistency within the community. For some practices, it was adopted due to marketplace competition and the device developers’ promotions. Companies that develop multiparametric fusion technology have not made a significant contribution to the advancement of urologic and radiologic educational needs. That said, some groups incorporated dedicated specialists within their practice to train for high-quality multiparametric fusion-based biopsies. Purchasing the newest promising technology without ensuring a framework to optimize clinical results will lead to poor implementation. In the United States, MRI is still mostly recommended for patients who have had a negative prostate biopsy, but due to age, PSA kinetics, or rectal examination, there is still a concern of possible malignant disease that was missed on the first biopsy. MRI is most uniformly accepted for additional information when evaluating patients for the need for a second biopsy. MRI will no doubt have an ongoing role in the active surveillance population. MRI will no doubt have an eventual role in decision making for possible first biopsies.

There has been a lot of very good, evidence-based literature coming from European countries that suggests that whole-body MRI, with the right software protocol, is exceptionally helpful in evaluating metastatic disease. Unfortunately, in the United States, this protocol takes 45 to 60 minutes to accomplish, and unfortunately, translates to a challenging economic utility model for the MRI efficiency from an administrator perspective. There are many interesting and promising blood-, tissue, and urine-based markers, genomic assays, and additional imaging techniques, which require ongoing trials to determine how best to use them for the most efficient value-based care model. No single test—MRI or any other blood-, tissue-, or urine-based marker—is perfect. Eventually, we will hopefully develop a cost-effective algorithm that combines a panel of all the different biomarkers. MRI is part of that discussion, but we don’t have that sorted out currently. There have been multiple PET scan technologies developed in the last several years that have been assessed for improved potential sensitivity and specificity, and ultimately, to improve the accuracy of the data that shows cancer spread and its location. MRI and Axumin PET scanshave been approved for advanced prostate cancer patients. There have been other PET scans such as FDG, C-11 Acetate, C-11 Choline, sodium fluoride, which have not received widespread reimbursement approvals nor widespread accessibility. There is also no consensus recommendation for these technologies.

Tim M. had a Gleason 9 prostate cancer removed by his urologist. He spoke with Prostatepedia about his struggles with ED posttreatment.

How did you find out you had prostate cancer?

Tim M: I had the typical issues that people talk about: urination and a PSA that was increasing a little bit. I had a phenomenal general practitioner, a doctor who really cared. He wanted me to do a biopsy. I was resistant. I said, “Oh, come on, Doc. This must be an infection or something.” Unfortunately, I resisted for about six or seven months, maybe even longer.

Finally, he said, “No, you’ve got to go for the biopsy.” So I went to a top doctor in my area. He did a check and said, “I don’t really think there’s going to be a problem, but let’s do the biopsy.” So I did it. He called and said he was surprised to say that I had aggressive cancer.

What kinds of treatment did you have?

Tim M: I really didn’t have much of a choice. My doctor said I needed surgery right away. He was a leading surgeon with a phenomenal reputation. I had the surgery two years ago.

Did the urologist talk to you before surgery about the potential for erectile dysfunction (ED) after treatment?

Tim M: Not really. He did not really touch on it. We asked him about it at one of the interviews. If we hadn’t asked him, I don’t think he would have really talked about it. I’ll never forget his answer. He said it was 50/50 whether or not I’d get ED.

What happened after the surgery?

Tim M: The surgeon completely removed the prostate. The cancer had gotten out of the capsule, but he thought he got it all because my margins were clean. I was very lucky. He was comfortable that we had it all. I didn’t have any problems with urination. The catheter clogged up one time, which was actually one of my biggest fears, believe it or not.

The catheter?

Tim M: When I was about 17, I went to see a friend who was in the hospital. He had a catheter and he explained to me what they had done to him. It left a burning impression in my mind. There’s a tube where? That kind of stuck with me. That was one of my concerns. I did have some issues with the catheter, but after that, everything was fine except for the erectile dysfunction.

Can you talk a bit about that?

Tim M: Nothing seems to really work anymore.

Have you been able to talk to your urologist about it?

Tim M: He gave me some pills—Cialis (tadalafil) and the other pills. It didn’t help. Then he said to try the injections, which seemed to help a little bit, but not really. He wanted me to increase the dose, but I really didn’t want to do that because of all the warnings: if something goes wrong, get to a hospital right away. The whole deal with the needle and the possibilities of side effects put a damper on things.

Did you talk to him about any other options?

Tim M: He went through all the options with me, including the vacuum and an implant and none of them seemed too attractive to me.

How do you feel about all that?

Tim M: Pretty bad. But you know, as you get older, you begin to accept things a little bit more. I guess you have to. I wasn’t happy about the cancer to begin with. All I can do is do what I can do.

I just turned 70 this month. I also have some cardiovascular issues. I go to the gym. I try to do what I have to do to keep conditions under control as best I can.

My doctor called me at 8:30 the night of my diagnosis and said, “I have to tell you you’ve got an aggressive cancer. It has to come out right away.” There was no light discussion. It’s not like I had a choice. If I had let it go, I would have died.

He was so focused on your cancer that he wasn’t really even thinking about potential ED?

Tim M: Yes, I believe so. That was the priority.

Did you have any problems with incontinence after the surgery?

Tim M: A little bit. I still wear pads, but I barely need them. I just got used to them.

He had suggested that I do Kegel exercises. But it’s weird. Because of my cardio situation, I wind up going to the gym and working like a fool for hours a week, but I just couldn’t get into those exercises. The pads were just too convenient, but that’s pretty much dried up at this point. The only time I have a problem is with stress if I’m exercising or something like that.

Do you have any advice for other men about to have prostate cancer treatment?

Tim M: You have to do what you have to do and deal with what you have to deal with. What you have to deal with might not be too good. There is nothing good about it in my view. My advice is to consider that ED is going to be an issue.

Do you think that more men are suffering from ED than surgeons think?

Tim M: Yes. I do absolutely think that. I’ll tell you something else. It’s a little bit sensitive to talk about, but I’ll just come out and say it. How do you define erectile dysfunction? You know what I’m saying? There are different levels of an erection. Obviously, when you are younger, it’s one way. My question is, where is the threshold? What if you end up with a three-quarter situation? My doctor told me 50% of men have ED, but of the other 50% what in the hell was the quality of what they had left?

Was the erection like what they had before or was it just enough so that they could use it?

Tim M: Yeah, just enough to use. I mean if you’re not going to be able to perform to some degree of quality, why bother?

Also, there’s a secondary problem, which is a psychological issue. When you ejaculate, there’s nothing there.

That must be a bit demoralizing.

Tim M: That was very demoralizing. Some people say, “What’s the difference?” There is a difference. It’s a mental thing. To tell you the truth, my first thought was: “Have I become like a woman? Is this an orgasm that a woman would have?” The physical aspect is not the big thing. It’s how you’re interpreting it and what’s going on inside your mind that’s the major thing.

It changes the whole experience.

Tim M: Thank God this didn’t happen when I was in my forties.

It might be worth going to see an expert in ED.

Tim M: Well, I know all the possibilities. It’s the shots. It’s the vacuum. It’s the operations.

From age 15 to 68, it was all just a natural happening. And now, you’re talking about mechanisms and devices and shots and operations and you have to push a button?

It sort of takes you out of the moment.

Tim M: It puts a whole different perspective on the deal. Men should definitely be prepared for what’s going to happen. I do think more information needs to be out there.

The more men know about what may happen the better they can prepare themselves?

Tim M: Yes. I think where doctors make a mistake, at least in everything I’ve seen and read and everything that the doctor has said to me, is that this is not a binary A or B thing. Do you have ED or don’t you? It’s not like that. It’s more like: do you have no dysfunction or do you have some? Is it the same as before or not? That’s important. My guess is that the vast majority of guys are going to say no.

What are the current thoughts on the role of surgery for recurrent oligometastatic disease? [Oligometastatic disease means you only have three to five metastatic lesions outside of the prostate gland.]

Dr. Edward Schaeffer: Many surgeons and patients are enthusiastic about aggressively treating oligometastatic prostate cancer. I’m also enthusiastic about the possibility that this approach could help patients. But I think it is very important for patients reading this interview to understand that these kinds of studies are totally experimental; we do not know yet if these approaches will benefit men. Although I’m personally enthusiastic about these kinds of approaches—and am the principal investigator on a study exploring this called the TED trial. (TED stands for Trimodal Elimination of Disease and uses surgery, radiation, and systemic [chemo-hormonal] therapy to eliminate all visible evidence of prostate cancer.) However, I really only recommend that the average patient seek treatment for their oligometastatic or recurrent prostate cancer in the setting of a clinical trial. This is really experimental. We don’t know if it helps and it may actually hurt people—this is why it needs to be done as a trial.

Is there any controversy over surgically treating the primary tumor when a man’s cancer has already spread outside the prostate gland?

Dr. Schaeffer: No, I don’t think there is any controversy in that. If you mean is there controversy in over-treating the prostate if a man has ogliometastatic disease, then yes, that is controversial. But in my mind, surgery benefits most men with large bulky high-grade cancers. Radiation is less effective in those cases.

In the last three to four years in my practice, I’ve seen more and more men with more advanced high-grade bulky cancers. I believe, although this hasn’t been shown in a randomized clinical trial, that the best way to manage these cancers is the way we manage many other cancers: a multimodal approach of surgery followed by radiation and potentially chemotherapy.

Why do you think more and more people are being diagnosed with bulky high-grade disease?

Dr. Schaeffer: Several reasons. One, the United States Preventive Services Task Force (USPSTF) changed their recommendations in 2008 for men over 75 and in 2012 for men under 75 for PSA screening. It’s well documented that there have been relaxations in PSA screening and that relaxations in PSA screening have resulted in fewer biopsies.

Think about the natural history of prostate cancer: if you had an aggressive localized cancer and left it alone for five to seven years, it would come back as a bulky aggressive cancer most probably involving the lymph nodes or beyond.

And that is exactly what we’ve seen. Dr. Jim Hu published that exact observation in JAMA Oncology in December 2016. Unfortunately, we’ve now proved that what we thought would happen did in fact happen. The screening recommendations are not to the benefit of the patient. Fortunately, the USPSTF recently revised their recommendations and now suggest that PSA screening is something that physicians should bring up and discuss with their patients. This is a big step in the right direction.

What are the current points of controversy in the world of prostate cancer surgery—both for men who have been newly diagnosed and for those facing recurrence?

Dr. Schaeffer: Surgery for prostate cancer remains the gold standard, the best way to c

ure the disease. It is also the oldest treatment. Prostate cancer surgery was first performed in 1904; it’s withstood the test of time.

The big hurdle for prostate cancer surgery has always been maintaining its outstanding cure rates while continuing to minimize postsurgical toxicity and side effects.

The operation has certainly evolved over the last 30 years. Dr. Patrick Walsh at Johns Hopkins University was my mentor. He perfected the open radical prostatectomy. Many Johns Hopkins alumni have now brought minimally invasive laparoscopic robotic prostatectomy online.

Today, for almost all cases, the laparoscopic robotic prostatectomy offers a state-of-the-art approach. Still, it is important for a man considering surgery for prostate cancer to find the most experienced surgeon he can. Ultimately, experience trumps approach.

You need to find a surgeon you like, because you’re going to have your surgeon for the rest of your life.

You need someone who has enough experience to give you a good outcome. Patients ask, “Should I come to you?” I say, “I’m confident I can help you, but we need to have a great relationship as I’m going to take care of you for the next 30 years…”

Is there a learning curve for robotic prostate cancer surgery?

Dr. Schaeffer: There is a learning curve to prostate surgery, period. Prostate surgery is incredibly complex. In an average surgeon’s hands, it is a four-hour operation. The surgery requires an intense knowledge base. It’s difficult whether you choose an open approach or a laparoscopic robotic approach.

I believe there are some subtle things about a robotic approach that an experienced surgeon can translate into better outcomes for patients. Ultimately, an open operation is not that different from a laparoscopic approach. But, yes, there is a very steep learning curve to robotic prostatectomy.

My other general philosophy is that I don’t consider myself to be a technician—a robotic surgeon. Rather, I proudly consider myself to be a physician who takes care of men with prostate cancer. One of my skillsets is that I’m able to perform prostate cancer surgery well. I do both open and laparoscopic approaches in my practice, though I favor the robotic approach. Ultimately, though, I consider myself to be an expert in prostate cancer who offers patients a good understanding of which treatment approach may be right for them. That may be surgery or radiation or surveillance.